Laura from Laughing While You’re Crying

Hi, I’m a Mum of 2 boys and have been happily married to my best friend, Joel, since 2003, whom I met at university whilst training to be a primary school teacher in 1997. I loved my job and had worked my way up to senior leadership before falling ill in January 2014. I loved books, traveling, Pilates, yoga, swimming and occasionally writing poetry. I also took silversmithing classes and unlocked my creative side. I can no longer do most of these things, but I do love making simpler jewellery (without machines) and I now write poetry often, even selling some of my work. This is the story of how my life changed from a full, happy and exciting one, into a one of fighting to be heard and to do a little, but learning how loved I am by the people that matter and learning how to be resilient, strong and determined. I’m afraid it’s a long story, so grab a cuppa and get to know me. Find reassurance, hope or even pick up some practical advice. This is a journey of hope, despite having to wait patiently as each new challenge becomes a new chapter. My aim is to help just one person with my story, if I achieve that, then I have done what is set out to do.

My Story

My story starts In 2009, the day after I had my first filling at the age of 32; I was struck with severe, constant facial pain. I was told it was a tooth infection, despite no evidence on X-ray. Then told it was sinusitis. I was still in intense pain, though, despite weeks of antibiotics. I continued to teach until I woke one morning and couldn’t lift my head off of the pillow. This time I was diagnosed with trigeminal neuralgia. A few weeks later I was back teaching. I continued to suffer daily facial pain and headaches. Months went until I finally saw a consultant and was told that this was actually all a migraine! Confused yet? I was! I saw a neurologist nearly a year after that day at the dentist; migraine was the final diagnosis for all the pain, despite having no tests. I have been always been well supported by my family doctor (GP) and with preventative medication and complementary therapies, I got used to living with low-level daily pain and managed to enjoy life again.
I started teaching in a lovely little school in September 2012. The school had a wonderful community and with small class sizes; it the least stressful and happiest job I’d had. However, my migraines increased in frequency and I had a week long attack in January 2013. Once the increased dose of medication kicked in and everything was under control again; I realised I wanted more job responsibility. I got a promotion in another lovely school in September 2013. However, I had walked, unknowingly, into a stressful situation which nobody had tackled. Sadly, my migraines increased and nearly every weekend was ruined. It was so bad by Christmas that I was referred back to the neurology team for new advice.


On Sunday 19th January 2014, my life changed. I had a severe migrainous attack, but after a few days, I pushed myself back to work. But, when I arrived at school, everything was spinning. I knew I wasn’t well enough to teach and was sent home.

Diagnosis

I saw a new neurologist as an urgent case and he was so helpful; he was the first specialist who took me seriously. After 5 years of pain and suffering, he was the only doctor to order an MRI, but he diagnosed me with chronic migraines. I tried different diets, every preventative used for a migraine, relief medications and many alternative therapies. Each time I tried a new preventative, I had to titrate (adjust the balance of drug dosage) down from one, before starting another; so everything took ages! The neurology nurse was unhelpful and unpleasant and the neurologist always succeeded in making me feel like it was ALL IN MY HEAD! I was frustrated and exhausted from the lack of support. So, I became a migraine warrior and started raising awareness, however, I still felt there was more to this; so persevered with trying to find answers.

In late February 2014, I was diagnosed with subjective pulsatile tinnitus. I knew instantly that this was the key to finding the answers. I found out all I could, to try and fit the pieces together. I found a specialist in Cambridge who was great. He took a focused medical history and palpated my neck. He thought I had IIH or Idiopathic Intracranial Hypertension. My neurologist accused me of being deceitful by getting this opinion and he refused to continue to treat me!

When I saw the headache specialist, she took a detailed history going back to childhood. She felt I’d been having migraines since puberty, which was a revelation. It explained why I’d had so much time off school with, what was then diagnosed as, post viral syndrome and regular sinusitis. When I was late teens, the late nights, alcohol and poor eating habits, affected my blood sugar levels and I could become aggressive. It also accounted for the horrific symptoms I had after eating anything containing Monosodium Glutamate/MSG. She also wouldn’t treat me if I saw the Cambridge team.

Medical Procedures 

So, I had chosen my team and was happy to now be under the care of a team, who worked across departments, to help those who were like me; left in Nowhere land. After studying the thorough scan, they found that I had stenosis (abnormal narrowing) of the blood vessels inside my skull. The bones in my skull were constricting the veins so I had restricted venous outflow. In simple terms, it means that the blood could get in, but not drain out: watch this video. This increases the cerebrospinal-spinal fluid (CSF) in my brain, causing it to feel like a pressure cooker inside and a vice grip outside the skull. I felt reassured that, despite a long, scary treatment journey, I was on the right path. I have a local neurologist to treat me now, however, she doesn’t agree with the Cambridge team’s methods; which even they admit, are controversial.

One day in late September 2014, I passed out for no apparent reason. My boys were with me and remained calm and sensible. The next morning, however, I still felt awful. I was shaking, nauseous and was in a dizzy, marshmallow like world. I could barely move. The next day, I couldn’t stand on my own and sobbed in agony all day; the pain was like nothing I’d experienced. A paramedic came out and found that my blood pressure dropped on standing, but she couldn’t help me. I was writhing in pain that was much worse than labour (and I’ve had a 10lb 9oz baby naturally)! We went to A&E in desperation, but It’s almost impossible to get oramorph for invisible pain. After 2 hours, the Dr did eventually give in. The pain remained horrendous, even with oramorph and the cocktail of painkillers prescribed by my GP. Joel managed to get me admitted to Cambridge on the Friday, I had a lumbar puncture and more tests. I was relieved from all my symptoms after a few days, despite having a borderline CSF reading. I was officially diagnosed with IIH in October 2014.


Life with chronic illness

My mobility is very poor; I cannot walk unaided, as I stumble, fall and even pass out. I have walkers and a stairlift to get around the house. On the rare occasions I get out of the house, I use a wheelchairI and stick. I am often dizzy, feeling like I live in a marshmallow world. I use ear plugs and sunglasses for sound and light sensitivities. I live in my bedroom, with the black-out blinds down 90% of the time. In regards to the teaching career I’d worked so hard for; we all hoped that surgery would allow me to recover enough to return. Sadly, but inevitably, I was amicably dismissed in April 2017. I was told that I would always have a job, if I do recover enough to return. I couldn’t have asked for better support from an employer.


Daily activities

My husband is my main carer with my 2 boys, now 11 and 13, being young carers. I also have 2 hours care each weekday to help with my care during the day, as Joel has a busy full time job. The Carers come every lunchtime to do basic care; such as ensuring I eat, and jobs I would normally have done, such as the laundry and preparing meals. Having Carers has helped me not to feel so guilty about what I can’t do and I’m now much better at saving my energy for my family and close friends. It takes me days to get over a trip out or from having visitors, but I’m determined to live life to the fullest that I possibly can. We’re still trying to process our new normal and it can still be upsetting, especially when I’ve been stuck in bed for weeks. I can no longer do most of my hobbies, but I do find relaxation and distraction in making jewellery and accessories. I have turned this into a small business, which gives me a sense of purpose, called Paprika Jewellery & Accessories.

Above is a link to my Conscious Crafties shop, which was set up, to help those with disabilities, chronic illness and their Carers, find a purpose. As many of us with chronic illness do, I have found out who my real friends are and mourned the loss of others, who decided they were done with me. It is sad to think that people who have been part of your major life events, can just drop you because you cancel on them. However, I have met many, new and wonderful friends through support groups and within the Conscious Crafties community. Conscious Crafties website

Medication and co-morbid conditions

As well as IIH and chronic migraine, I have also been diagnosed with eczema, anaemia, depression and anxiety, Vitamin D deficiency and hypothyroidism; which are currently controlled. I have recently been diagnosed with neutropenia, which is a low white cell count, where you are prone to infections, particularly of the skin.

My pill box is over-spilling with my medication, which is organised by my Carers each week. I currently take: Naproxen, Morphine tablets, amitriptyline, diazepam, pregabilin (Lyrica), Levothyroxine, Lansaprazole, vitamin D supplement, vitamin supplement with iron and quite regular doses of antibiotics. I also have a rescue kit by my bed and in my handbag. I use oramorph, stronger doses of diazepam when the pain is out of control. I also need to take an anti-emetic, metaclopramide, for nausea and prochlorperazine (stemetil) for vertigo and dizziness.


I also make use of alternative therapies such as; aromatherapy oils, meditation and visualisation and pro-biotics. I also try and have reiki, kinesiology and cranial osteopathy when I can afford to. When I do my (mostly) daily physio, I add a little gentle Pilates techniques when I can. I also use many techniques for mental health.
Surgery

I had a right sided styloidectomy (where they removed a small part of the skull behind my ear) and a stent in the left transverse sinus. This is explained in the IIH articles in the conditions section. A simple explanation is that I have a stent (small mesh tube to expand the vein) carefully fitted, as it cannot be moved once in, into the left transverse sinus vein. This vein is in my brain and feeds my jugular vein. There is still a blockage below this, so I’m likely to need further skull surgery in the future. In June 2017, I am having a mastoidectomy (drilling out some of the bone in the C1 vertebrae) behind the styloid process (red area on image below) which was removed in 2016. We hope this will be enough to open the vein more fully, but I may need another stent here. I have had small improvements with each surgery, so we live with hope.


Put in the words of my neuroradiologist ‘this is a marathon’. We continue to adjust to the journey we are on; we know that there are no quick fixes and there is no known cure for IIH. We do know that each procedure and operation, moves us a step further to a better quality of life for us all. My amazing surgeons have now had their groundbreaking study published. Please find links in The bio section-What is IIH? 

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Pill Head, Pot Head, New Age Health Nut, and let me tell you what really works….

Does the title sound horrible? Was it mean? Did I offend anyone? Why? Who cares? Do you use capsulated or pill forms of medication? Do you utilize marijuana? Yoga? Acupuncture? Meditation? Diet and Exercise? Religion? What do you do to control your health issues and conditions, manage your life, and function in any capacity?

Guess what…..it is none of my business. It really isn’t. Does it work? Does it help? If it does, then have at it. If it doesn’t, then you may need to make a change. But here is the crux of the matter, it is no one’s business but your own.

Now, that will cause two reactions. Either “Damn Right!” or “But it might help you!” If it is the first one, I might ask what you are doing and how it helps, or not. If I do, you get to decide if you answer it or not. If you answered the second one, you may be part of the problem. But one thing at a time here.

Let’s start with the biggest one I see on support groups and websites and everywhere anymore and that is the lovely “opioid epidemic.” I feel I must make a clarification about this before I move on. The numbers used to represent the casualties of the opioid epidemic include heroin uses and overdoses, illegal obtained medication uses and overdoses, natural and accidental deaths of anyone with opioids in their system, and any death that can be connected to an “opioid-related” issue (whatever that is).  That being said, the majority (between 60-89%, depending on what you are reading) are, in fact, illegal drug overdoses. Not prescription drug overdoses. Not even illegal obtained prescription overdoses.

Now that we have that wonderfully over-used phrase cleared up, let’s move on to another aspect. Addiction versus dependence. Addiction is when you have a psychological need for something, anything. It is a falsely created craving that causes your body to want something due to the chemical expectancy (whether the item is the chemical or it is the chemical your brain releases upon using/experiencing the thing). Dependency is when you have a physical need for something. This is when your body has a physical need for something in order to properly function. Now, these terms have a gray area, as some medications can cause a dependency that is actually more of an addiction than a necessary need and some habits are addictive and you gain a dependency on that habit to fulfill a mental function or reaction in order to move past the need. Patients who use medications in order to function are dependent, not addicted. The majority, by a lot, of patients who take medication strictly because they are addicted to the chemical response is a hell of a lot lower than people think.

For someone who has never had a level of pain that necessitates a medication to dull it enough to function, the idea of using something that can often make your average person lethargic, “out of it,” or somehow not in a normal state is not understandable. What they do not realize is we who have a level of pain requiring pharmaceutical assistance have usually started at the bottom of the pain relief ladder and worked up to something strong enough to dull the pain enough to function. We didn’t suddenly start taking ridiculous amounts of morphine to feel good. In fact, many of us aren’t on morphine and probably don’t like it. But I can tell you that I miss having my Percocet prescription. I have no insurance or medication right now so flares and bad pain days force me to lay in bed, wiggling around, crying but trying not to cry, and begging for something, anything to make it stop. I want to die on those days. I am lucky if some over the counter nighttime med or allergy med can knock me out until the worse of it passes. That or I have to go to the E.R. But when I was on Percocet, you would not know if I was on it unless I told you I was on it. If anything, the only clue was that I was doing more than I usually did. The pain would be low enough that I could clean, work, cook, and function. Sometimes too much. And this is true for a huge percent of the people on pain medication because of a condition. Not only that, those on something strong enough to make them seem out of it probably have a condition that would have put them in the hospital, if not led to something suicidal, and probably are ok with being a bit high in order to not want to kill themselves. Who are you to judge?

Next up: Marijuana/Cannabis. Miracle drug? No. Useful for a lot of medical problems? Yes. Will it replace pain medication? No, not for people with serious injuries and neurological issues. Will it help lower the need for some medications? Probably. There are so many types and strains and ways to use Marijuana/Cannabis that the idea of someone using it means nothing. High THC and yeah, they can get high. High CBD means it is helping with medical issues and causes little to no high. I wrote an article on the subject HERE if you would like to read more. But people who use it should enjoy their benefits and not try and tell others that it will help them unless you are a doctor, know their medical history, and know for a fact that it absolutely will benefit them and not cause them any issues….and all of this is probably not true so stop telling people to smoke weed and throw away the pills. You have know idea how ironically idiotic you sound. It works for some, not others, and the effects vary from the strain and mechanism of use as well as the person, their medical issues, medications, and chemistry.

Moving on. Yoga, acupuncture, meditation, essential oils, diets, and whatever random pill or powder you were talked into buying that you believe works………good for you. Now stop. I have to say, I am not sure if the anti-pills, anti-weed, or the people that push any alternative cure/therapy/gimmick on you are worse. I really don’t. And I am not saying that yoga or acupuncture does not work. For some things, they can be useful for. Essential oils are great for topical uses and aromatherapy, but it isn’t going to do anything for bones, muscles (with the exception of rubs and massage oils for light muscular pains), or the nervous system. I am all about my essential oils, but they are not going to heal my screwed up spine or Celiac Disease or the huge list of other problems. So yes, some uses, but not a cure-all.

Dietary supplements, powders, pills, shakes, cleansers, detox, and such things are a scam. I am sorry, but they are. Research the information on a legitimate site and look for my upcoming article but that stuff is a money making scheme that you have bought into. The claims they make? All crap. Seriously. I am a ghostwriter. Those companies hire off the job boards I view for people with anything over a Bachelor’s degree to get paid $100 or more to claim the stuff works. They are not FDA monitored. They do not have to list what is actually in the product (most contain high amounts of caffeine even if they say caffeine free, and many contain dangerous supplements). They pay people for testimonials and for “Doctor says…” So just stop. You like that stuff, good for you but keep it to yourself. It’s dangerous. And for the people with any medical/health issue, many of them are absolutely deadly. So stop. For real.

Diet and exercise is my last point and is so because it is very subjective. I am not in a wheelchair currently. I have a cane but do not use it and should, I fall all the damn time. I look “normal.” My stomach is a map of scars because my internal organs, from my esophagus to my anus and much in between, has been removed, rebuilt, or operated on. My spine has severe damage, healed somewhat but incorrectly, and one day it will be done for good. Exercise is absolutely out of the question for me. I was removed fro physical therapy due to insurance issues and their fear that I would end up paralyzed by the slightest jar to my spine or hospitalized due to damage to my organs. I can’t exercise. Many, many people can’t. If you can, good for you, but don’t guilt someone who can’t physically do something. Diets are just as bad. I can’t have anything gassy, acidic, carbonated, fibrous, or gluten. I am iron intolerant and iron deficient. My best diet, as confirmed by my docs, high in medium rare to rare red meat, high vitamin rich foods, fruits, dairy, and some vegetables. I can’t and don’t want to be a vegetarian or vegan. If I eat gluten I can end up in the hospital, as few as 5ppm causes my autoimmune disease to kick in. I have reasons for my diet. Now, helping someone understand the ups and downs of a diet is fine. Suggesting they try one is okay. If they say no, cool, leave it at that. You do not know their deficiencies, dietary needs, medications, and conditions (not to mention their budget), so don’t diet shame either. Stop it.

I realize, at some point, I went from telling you to tell other people to stop judging to tell you to stop judging. I apologize for that but I suppose it is habit. The medication and cannabis are something often openly talked about and accepted in the chronic pain world. The dietary supplements, exercise, and diet issues are something I see people in chronic pain and conditions forums pushing on other patients. So, I guess that is why I changed my wording. I don’t mean it at you, necessarily, unless you are one of those people. But if you see people like that, feel free to point them this way. Tell them to chill out.

We are constantly being judged, misjudged, evaluated, ignored, guilted, and so many other adjectives. Take it in stride or do what I did, I left a lot of groups and pages. I have enough problems and don’t need to here every professional Facebooker try to tell me in five minutes off of the glance at what is public on my profile something that will change the issues I have lived decades with. That doesn’t happen. Maybe if it was Dr. House or something, but like I said, that doesn’t happen. Often it is either a sense of entitlement, boredom, anger, frustration or just plain old idiocy that make these people say what they do. Do your researcher. You know my way of it. Check Mayo, John Hopkins, NIH, or some other legitimate site. Don’t use blogs (even mine except the ones with the little links to the big guys with the research), “natural” sites, sites that are owned or operated by the company or group you want information from, or a Facebook post as a legitimate source of information.

You know you better than anyone else. You decide what others know about you. You decide what you share and what you do not. That is your freedom and choice and you should use it. Don’t let people bully or guilt you into thinking what works for you is bad. They don’t know. They don’t. You know. Even if it is bad, you know. So that is my inspirational/rant on the topic of managing your stuff. You do you, and what you think is best for you.

Idiopathic Intracranial Hypertension/IIH

Idiopathic Intracranial Hypertension or IIH is a rare neurological condition, that has no cure,  and affects 1 in a 100,000.

Idiopathic-of unknown cause. Intracranial-occurring inside the skull. Hypertension-increased pressure
Simply put, this condition is raised pressure inside the skull, usually with no known cause.

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This rare condition has few case studies, so I am also drawing on my own and other’s accounts too. Many patients compare their symptoms to those of a brain tumour patient’s; thankfully, in my opinion, without the tumour. IIH occurs when the cerebral spinal fluid (CSF), which surrounds the brain, has nowhere to go; due to increased pressure in the skull. IIH is most common in overweight women of childbearing age. There is usually no known cause but studies show that; some medication, hormones and restricted venous outflow; are probably some causes of raised pressure. Current UK statistics show: 93% of sufferers are obese (bmi >30); 25% of men with IIH have permanent, severe vision loss and about 5000 UK citizens have IIH; with more than 800 of these, being children. Statistics taken from IIH UK

PROGNOSIS:
Sometimes all symptoms unexpectedly disappear, but usually a mix of medical and surgical treatments are used with varying success. For others, everything is tried, but the patient is left with debilitating symptoms. IIH used to be called Pseudotumor Cerebri or Benign Intracranial Hypertension, however, these are now considered outdated, as both terms suggest that the condition isn’t harmful. This is misleading, as although IIH isn’t usually life threatening; unmonitored pressure or repeated surgery can be dangerous. Almost always, those affected have to cope with a life changing condition.

SYMPTOMS:
* Papilledema
* Pulsatile tinnitus
* Chronic migraine/severe headache disorder
* Temporary vision loss
* Pain behind the eye and on movement.
* Blindness
* Diplopia (double vision)
* Vertigo
* Nausea/vomiting
* Fatigue
* Aphasia (difficulty using or understanding words)
* Disorientation
* Depression/Anxiety
* Pain in arm, shoulder and/or neck
* Balance issues (acting as though drunk)
* Decreased depth perception
* Poor spatial awareness
* Visual disturbances; particularly poor peripheral/field vision
* Photophobia
* Photophobia/Hyperacusis (extreme amplified sound, such as a kettle boiling sounding like a jet engine))
* Long and/or short term memory loss
* Confusion/Brain fog
* Mood swings
* Alloydynia (pain sensitivity-pain following activities that wouldn’t normally hurt, such as having a shower)
These are not all present in all patients and many symptoms overlap other conditions; particularly chronic migraine. Each patient is different so this is not an extensive list, or for self-diagnosis. Seek medical attention if you are concerned.

MOST COMMON SYMPTOMS:
Papilledema (swelling of the optic nerve) is the most commonly accepted indicator of IIH. The majority of patients with IIH, suffer from visual disturbances. Often papilledema is found during a routine eye examination. If left untreated, papilledema can cause peripheral, partial or full loss of vision. Any sign of swollen optic nerves need urgent medical attention, as swelling of this important nerve (that carries information from the brain to the eye), can indicate a variety of serious medical conditions. The optic nerve is surrounded by CSF (to protect it from sudden movement). To read more; see this article. (Please remember that Benign Intracranial Hypertension and Pseudotumor Cerebri are outdated terms).

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IIH WITHOUT PAPILLEDEMA
Many neurologists/doctors do not accept that IIH without papilledema (IIHWOP) exists. Through the IIH UK forum, many patients without papilledema, describe being misdiagnosed or told they are in remission. Something needs to change for these patients, so that research such as this-Comparison of IIH with and without papilledema  is heard by the specialists.
Recently published research from a team in the UK, looks at how skull surgery may help a small group of patients who have restricted venous outflow, and CSF readings below the markers for diagnosis of IIH. These patients often respond well to interventions and surgery. The data is limited and it is controversial amongst neurologists. Read the abstract to the published paper here.

PULSATILE TINNITUS:
Pulsatile tinnitus (PT) is usually present with raised intracranial pressure. Pulsatile tinnitus is different to ringing tinnitus because it, almost always, has an underlying cause. PT is a whooshing or rhythmical sound that is in time with your pulse. It may be present continually and usually indicates that there is a change to the blood flow in the vessels or arteries near the ear. Pulsatile tinnitus is either objective or subjective. If the pulsing can only be heard by the patient, it is subjective, however, if someone else hears it, it’s objective. If severe headaches present with PT; this can be a sign that there is IIH. The presence of pulsatile tinnitus may be a sign of a serious condition, so please seek medical advice if you are concerned. To find out more about pulsatile tinnitus, please read this information from The British Tinnitus Association.

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SEVERE HEADACHES:
Debilitating headaches and pain around the eye(s) are present in nearly all (about 90%) cases of IIH. Patients report IIH headaches to be more severe and different to previous headaches. In one study, 78% of patients report this as their first symptom and 72% as the most severe. 73% report it to be a daily symptom. The pain is linked to increased intracranial pressure, so it usually worsens when the patient is lying down, bending over and on standing. As the headaches associated with both IIH and migraine are so similar; there is strict criteria for diagnosis. Migraine is usually unilateral/one sided and pulsating, whereas IIH headaches have to have at least one of these characteristics: daily occurrence, aggravated by coughing or sneezing and non-pulsating pain. IIH headache improves when CSF fluid is removed via a lumbar puncture. Many patients suffer both conditions so symptoms can be difficult to distinguish. Figures taken from this report.
DIAGNOSIS:
As more research into IIH happens, the indicators for diagnosis change. To diagnose IIH, neurologists follow the Modified Dandy criteria. This entails an LP to determine signs of raised pressure from the CSF fluid-now classed at >25cm H2O, normal CSF composition, small/normal ventricles and no mass on imaging. Diagnosis establishes known symptoms of IIH and rules out symptoms of other brain conditions. It entails a thorough eye examination, usually using an ophthalmoscope to detect swelling of the optic nerve. An MRI or CT scan is usually obtained. In some cases, an MRI/CT scan with dye is taken, showing the makeup of the blood vessels. An LP measures CSF fluid and is used to see if it produces prolonged relief of symptoms after 72 hours. An ICP bolt may be used to measure pressure over a longer period of time. Read more about this here . As mentioned previously; a new trial works with UK patients, who have restricted venous outflow; as the cause of increased pressure. In these cases, a ct venogram or venoplasty is usually performed. This is where a camera is inserted through a catheter in a vein in the groin; they measure pressures in the skull and a ballon may expand a vein to monitor after effects.

TREATMENT:
Medication:
* Acetazolamide (Diamox) reduces the amount of CSF fluid, the body produces. It is the most commonly prescribed medication for IIH.
* Topiramate (Topamax) is an anti-seizure medicine which reduces the amount of CSF fluid, that the body produces and can act as a preventative for the headaches associated with this condition.
* Diuretics such as Furosemide or Bendrofluazide may be prescribed
* Analgesics such as Tramadol, Fentanyl, and Morphine may be prescribed to help with severe pain.
Please find more information about these medications here: Common medications for IIH
Surgical:
If medications are not as effective as required, surgical options will be discussed.
* A shunt-a catheter is used to divert CSF from one place to another where it can be re-absorbed, safely, into the body. There are 2 main types of shunt and 2 less common: A Lumbo-peritoneal (LP) shunt-inserted into the back to drain into the abdominal cavity; A Ventricular Peritoneal (VP) Shunt-placed into the ventricles in the brain to divert the spinal fluid into the peritoneal cavity; Ventriculo-atrial (VA) shunt-the lower catheter drains into the heart’s atrium; Ventricular-Plerual (VPL) shunt-fluid drains into the pleural cavity surrounding the lung.
* A venous transverse stent is an option for IIH sufferers who have transverse venous stenosis (abnormal narrowing). This is a very small (usually titanium) coil that is put in place and then allowed to expand so that the blood can flow more freely and therefore reduce intracranial pressure. Stents cannot be moved once they have been dilated.
* In very severe cases of papilledema, an ONSF (optical nerve sheath fenestration) may be used to reduce the pressure on the optic nerve.
* Styloidectomy is a procedure that has been trialed by a team in the UK-the only team in the world to do so, for this purpose. This involves removing a small piece of bone from the skull, the styloid process (see diagram), to allow more room for blood to flow through constricted veins. This then allows for stents to be used, in the best position.

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Much more information about this disease can be found here at www.iih.org.uk